Presentation on Communication Question 6

1. Presentation on CommunicationQuestion 6 6th Meeting of the Washington Group Kampala,Uganda 10 – 13th October 2006

2. Definition of responses WG6: Disability: Because of a physical, mental or health condition, do you have difficulty communicating, for example understanding or being understood by others? • ‘Some’, ‘a lot’ or ‘unable to do’ = yes • ‘no’ = no • Do you feel shy in group or social situations? Yes/no • Do you have difficulty in making new friends? Yes/no • Do you have difficulty in starting and maintaining a conversation? (0 – 3) • Do you have difficulty in generally understanding what people say? (0 – 3) • Combination: 2 X ‘yes’ on 2, 3 and 4

3. Patterns: non-problematic • A: No difficulty on WG6 and no other reported difficulties (true negative) • B: no difficulties except for ‘shy’ : Not a communication difficulty? • H: yes on everything: True positive; not sure of ‘yes’ on ‘shy’ and ‘friends’ – part of, secondary or unrelated to communication difficulty

4. Patterns: borderline • C: Similar to B with additional ‘yes’ on ‘friends’. Not a communication difficulty. (unproblematic) • D: ‘no’ on WG6 but ‘yes’ on ‘conversation’ • E: ‘no’ on WG6 but ‘yes’ on ‘understanding what others say’ • D and E: ? Role of hearing loss where cannot hear to ‘understand’ and ‘conversation’ but where do not feel they have communication difficulty. • F: ‘No’ on WG6 but yes on others (Combination of 2) – ? Same as for D & E but slightly more effect • I: As for F but with ‘yes’ for WG6: worse than F as has enough effect to be noted on WG6 as a problem.

5. Patterns borderline (Contd) • J: ‘yes’ for WG6 and ‘say’ – ?significant effect of poor understanding • K: as for J with ‘yes’ for conversation. • L: ‘yes’ for WG6 and for ‘friend’ and ‘shy’ but ‘no’ for understand and conversation – see being shy and not making friends as being communication problem.

6. Problematic • G: ‘no’ for WG6 but ‘yes’ on all others. Intermittent problem (e.g. from epilepsy seizure) or different frame of reference for WG6 and detailed Qs • M: ‘yes’ on WG6 and ‘no’ on all others except for ‘shy’ – effects of a mental illness rather than a communication and focus on introductory comment • N: ‘yes’ on WG6 and no on all others – focus on introductory phrase.

12. Comments on frequencies of patterns • NOTE: Frequencies are number of times a pattern arises and NOT a ‘disability rate’ • Unproblematic patterns (A, B and H) make up the majority of patterns • Borderline patterns (C, D, E, F, I, J, K, L) are less frequent than unproblematic but more than problematic • Problematic are least frequent

13. Analysis of ‘why’ comments • Reviewed 600 responses (until finding no new themes in responses) • Coded themes: • Showing understanding of the question (WG6) with or without difficulties • Problematic responses: ambiguous, focus on the introductory phrase, second language problems, non-health reasons, etc. • Other • Frequency of occurrence of each in first 600 cases of the cognitive dataset

15. Showing understanding of WG6 • No difficulty and mention understanding and expressing • Communication is not a problem • I speak and the respond perfectly • I don’t have a problem understanding people or being understood • I can communicate with people freely and I can write and have a mobile • Because we sit and converse and laugh together • No difficulty but no mention of understanding and expressing • I don’t have such problems • I am healthy • The way I feel • I feel confident • I am cheeky (!)

16. Show understanding (contd) • No difficulty and mention hearing • Can talk and hear as no problem • I have good communication. I don’t have problem hearing and speaking • Has difficulty and mentions hearing – mostly Deaf • Sign language users gave responses of 1 or 2 • Indicated no problems when talking to sign language users • Also included hard of hearing

17. Show understanding (contd) • Has difficulty and mentions physical problem related to communication • stroke • Epilepsy • Cleft lip and palate • Stammering • Heavy tongue • Weakness and illness • I can’t communicate when my mental illness increases • I get very weak following my dialysis. My mood is often off and I don’t talk too much

18. Borderline • Has difficulty but no specific attribution – does not seem to have a clear frame of reference for the Q • Because people talk too quickly • When people talk to me I understand very little of what they say • This is the major problem • There is limitation in the communication because of the complex • Am not intelligent • Just because • Because of the accident

19. Problematic understanding • Focus on introductory phrase (With/without difficulty) • I don’t have any mental or physical problem • I have no mental problem • Mentally fit • Shyness and lack of socialisation (have difficulty) • Complex because of albinism, self pity and not confident • Rarely communicate • Shy with new communication • Being shy with partners, particularly girlfriend

20. Problematic (Contd) • Cognition (have difficulty) • Sometimes I can’t remember and understand others • I forget things • Unrelated physical problem • Because of weak legs and arms, feel embarrassed • Because cannot see, cannot present very well • Second language problem

21. Problematic (contd) • Ambiguous – some have difficulty and others not • Don’t go out because of hand surgery (1) • Am handicapped (3) • I am now sensitised (0) • Thanks God (0) • Job application (1) • Because I have no stories to tell them (0) • I feel nothing (0) • When I get nervous I shout and then get mute because of the shock (2) • It is true (0) • Because you asked (1)

22. Other • Development issue • Because he is still young • Missing • ‘Don’t know’ or ‘no answer’

23. Conclusions • Generally question is understood • Hearing is only part of the understanding of communication • Introductory phrase can be misleading • Reference to Sign language could change response category from ‘yes’ to ‘no’. • Some confusion with cognitive problems and shyness • Few confusions with second language • Reference to problems such as blindness and weakness in legs and arms